I was diagnosed with a 7 cm pelvic AVM in 2016. Two Oakland specialists and two San Rafael specialist said they wouldn’t do surgery as it’s too complicated and dangerous. I finally found an Interventional Radiologist in Roseville who looked at the AVM in June 2023 and successfully operated with embolization 8/25/23. The AVM is now 1 cm. With coils etc preventing growth hopefully. I did develop an adjacent blood clot which is being treated with Xarelto. I’ll have a ct scan 9/29 to see if the blood clot has dissipated. My only side effect is tiredness, lightheadedness and dizziness. I think this is from the Xarelto blood thinner. I am also on Nortriptyline prescribed for nerve pain in the ischium but muscle and sciatica. The AVM surgeon thought the AVM was causing the nerve pain. Here’s hoping all improves/resolved soon.
Sounds like a really successful procedure to go from 7cm to 1cm, what has the name? Might be good to out it out here in case someone wants to go get an opinion form him/her. Not quite three weeks so sound like you are doing well, hopefully continued improvement and the pain is held in check and resolves with the success of the embolization. Fingers crossed for continued improvement! Take Care, John.
I did develop a 1” by 1” blood clot adjacent to the AVM site detected last week accidentally when they were checking a bladder issue. I’m on Xarelto blood thinner until 9/29 when they’ll CT scan the pelvis, and hopefully the clot will have dissipated. Unexpected side effect of Xarelto or combined with Nortriptyline I’m taking for AVM related sciatica- has been severe dizziness.
I’m happy to have you share both of these email.
I had vertigo after my pelvic embolization and subsequent blood clot, and after a month I tried this John Hopkins home treatment and it’s 80% better.